Mark your calendars to join us and make HPS history advocating for future treatments. The HPS Network will host an Externally-Led Patient Focused Drug Development meeting on June 10, 2022. This meeting will be open to the public, with speakers and attendees attending...
Newsroom - Articles
HPS Network awarded an additional $150,000 grant
The HPS Network was awarded a $150,000 grant on January 31, 2022, as part of the Rare As One (RAO) Network, a program of the Chan Zuckerberg Initiative (CZI). The HPS Network is currently completing a two-year grant from CZI. The first grant has allowed the Network...
Medical Device Nonvisual Accessibility Act introduced in the U.S. House of Representatives
U.S House of Representative Jan Schakowsky (D) IL introduced H.R. 4853, the Medical Device Nonvisual Accessibility Act to the U.S. Congress. The bill calls upon the Food and Drug Administration to promulgate non-visual accessibility standards for Class II and Class...
CB1R and iNOS are distinct players promoting pulmonary fibrosis in Hermansky–Pudlak syndrome
View the article at: https://onlinelibrary.wiley.com/doi/10.1002/ctm2.471 CB1R - and - INOS (Download this full article in a PDF printable format. 20 pages.) Click this link or the image below to access the full article.
HPS Network partners with NIH to create HPS Fellowship
The HPS Network has partnered with the lab of Dr. William Gahl at the National Institutes of Health Genetic Research Institute to create a post/doc position devoted to gene therapy research of HPS. The donation to cover the salary for two years has been given by the...
HPS Network and Broad Institute Form Genetic Testing Partnership
The HPS Network and Boston-based Broad Institute have formed a partnership to make genetic testing more available to families impacted by Hermansky-Pudlak Syndrome. The Institute is willing to provide free gene type testing to families in need, or who have not yet...
HPS Network Participating in the Million Dollar Bike Race
The Penn Medicine Orphan Disease Center (ODC) will host the 8th Annual Million Dollar Bike Ride on Saturday, June 12, 2021 to raise money for rare disease research. The Million Dollar Bike Ride brings over 750 cyclists and volunteers to Penn’s campus to ride either...
Pursue Your Dreams through the #RAREis Scholarship Fund
#Rareis Scholarship Fund- Deadline May 7, 2021 @ 3:00 p.m CDT The EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #RAREis Scholarship Fund. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000...
International Albinism Awareness Day is Sunday, June 13, 2021
International Albinism Awareness Day (IAAD) is on Sunday, June 13, 2021. This year’s theme and hashtag is #StrengthBeyondAllOdds. On this day, we would like to showcase how resilient and powerful those with albinism are. It is a day to share our voice, show our...
February 28 is Rare Disease Day!
The HPS Network celebrated Rare Disease Day 2021 by hosting a rare disease trivia on Gatherly. Thanks to our graduate student interns who helped curate the facts used for the event! Our membership was asked to spread awareness by sharing their stories on social media....